Medical Trials Need More Diversity

We want to move now to another story that comes from the world of medicine. From time to time you probably hear about clinical trials and that's how new drugs and devices are tested. Researchers say it's important to have a diverse group of volunteers for clinical trials so that medical advances can help more people. But according to the National Cancer Institute, African-Americans only accounted for 9.2 percent of the patients involved in its clinical trials, even though African-Americans are more likely than any other racial group to die of the disease.

But bringing more African-Americans into clinical trials means overcoming decades of suspicion and distrust. Our next guest volunteered himself and became the first American citizen and the first African-American participant in a clinical trial for one new method to treat prostate cancer. Junius Hayes is a retired federal worker in the field of science.

He held posts as NASA and the Department of Energy and he's with us now. Thank you so much for joining us.

JUNIUS HAYES: Thank you. I thank you for being here.

MARTIN: Now, three years ago you were diagnosed with an early form of prostate cancer. Do you mind taking us back to that, how you responded when you heard that news?

HAYES: It wasn't fun, that was for sure. I just couldn't get over it. I just had to find out exactly what did that mean because I've seen individuals who have gone in and out successfully.

MARTIN: How did you hear about the opportunity to enroll in this clinical trial and to try an experimental treatment? Do you remember how this opportunity presented itself?

HAYES: Yes. I came in for my regular visit annually by my primary care doctor and even though I was feeling well and I guess looking well, she said that she thought I should have a complete set of tests which involved getting the results from the PSA.

MARTIN: You mention the PSA test. The PSA test is the common screening test for prostate cancer.

HAYES: Yes. And I got the results from the PSA and they informed me that I had cancer, and they told me it was prostate cancer. So that sends you into a tailspin right there. Explained to me what my options were. And my options, of course, is do nothing and observe it. The other one was to take some radiation. Another one was to have surgery. Another one is a brand-new concept. And so with my scientific background and from an educational standpoint background is in biology and chemistry, that piqued my interest. So I asked about the new technology and that's when I found out that it was new not in the hospital, but it was new in the whole United States. So I volunteered.

MARTIN: Now, you are, of course, familiar with the Tuskegee experiment. This was back in the 1930s when white doctors conducted experiments on black men in Alabama to see how syphilis spreads. The patients weren't told they had syphilis. They were not treated for it. This experiment - and also a kind of general mistrust of the medical establishment - would you agree has kind of haunted the spectrum of research among a number of African-American for many years? Do you remember hearing about this or talking about this? I know you're man of science, but was this part of your kind of consciousness growing up?

HAYES: It's not only me, that Tuskegee thing, it really left a lot of deep scars in the black community because it was years before the general population and the black populist even knew about it. But I opted for it because I could understand why they did it down at Tuskegee, but I don't agree with it. But I understood technically what they were attempting to do. It was unethical but it flashed through my mind.

You got to rewind back to the '40s and I'm a little boy. And from the grandfathers and the grandmothers and the old-school, we learned about the slave trade and the burying ground. And then we witnessed to grave robberies. And the purpose, or the reason for the grave robberies was cadavers. And they were digging into the black graveyards to get skeletons to hang in the classrooms. That flashed through my mind, too, when you're talking about a clinical trial.

MARTIN: What helped you to overcome it? Is it just that your own scientific background made it just hard to resist - if I can put it that way?

HAYES: Since a little boy I always looked in future, both - I guess that's where I got into the science world. And I'm interested in the outcome of the information that would be generated, I just had problems with the way it was done.

MARTIN: You know, the research shows that there are interesting reasons why, and interesting racial differences, in why African-Americans and compared to whites don't want to participate in clinical trials. And the research demonstrates that what you're saying is true - is that for Caucasian patients are more likely to refuse due to, you know, the extra burden of being monitored and so forth. But for African-Americans they're more likely to refuse due to lack of interest, family pressure or feeling overwhelmed by the diagnosis. And I was just wondering if any of that was true for you. Well, you obviously did choose to participate, but did anybody in your family say, no, we don't want you in this; we don't want you to participate in this kind of thing?

HAYES: No, but if they knew about it they would say no. They would say no because of trust. We just don't trust people to experiment with us. The black male - just like the while male - they don't want to go to the doctor anyway, regardless of your race. When you put the color - we grew up going through Jim Crow. And when you come up going through Jim Crow days we weren't educated. So it's education has a lot to do with the disparity in the participation.

MARTIN: Well, I understand that you are now in remission. You are considered cancer-free. So congratulations with that. I'm sure that's welcome news.

HAYES: Oh, yes.

MARTIN: Is there something you would wish to say to others who maybe have some of the fears that we've talked about?

HAYES: I think that we need to have more clinical trials. We need to develop a bit more trust than we have now. And when we communicate with them with - I'm talking about black subjects now - you got to speak the dialect. We all speak English, but you got to speak the dialect and the dialect needs to have some sensitivity in the form of education. You got to educate them about if you want to be healthy, you got to detect it early, or find out if you're a targeted population. And we will see it just like any other race will see it.

MARTIN: Junius Hayes is a retired federal employee. He worked for NASA. He is a recovering cancer patient. He was the first patient in the United States to participate in a clinical trial to test a biodegradable balloon that would allow for more targeted radiation of prostate cancer, with which he is now in remission.

Junius Hayes joined us from member station WCVE in Richmond, Virginia. Thank you so much for speaking with us.

HAYES: My pleasure.

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MARTIN: Coming up, we talk about what might be one of the most sensitive conversations you might have with family and friends - about why you might want to have nothing to do with family - including your parents.

EMILY YOFFE: These people get pressure from others who really don't get what this childhood was like. And good for them because they had wonderful parents.

MARTIN: We talk about when it might be best to forget about forgiving. That's ahead, on TELL ME MORE from NPR News. I'm Michel Martin.